Opinion: NJ should pass overdue Aid in Dying bill

When you have a terminal disease, every day is precious, so you spend your free time on the things that deeply matter to you. That’s why I have spent some of mine advocating for the New Jersey Legislature to pass the Aid in Dying for the Terminally Ill Act (A1504/S1072), so that when I die, I will have the option to take prescription medication to peacefully end my suffering if it becomes intolerable.

The Legislature spent much of 2018 working with Gov. Christie’s successor, Gov. Phil Murphy, to fulfill his legislative agenda. But after nearly seven years of debate, 2019 is the time to pass this bill for the 63 percent of state residents who support this option. In addition, nine major state newspapers have endorsed the legislation.

Since Hawaii’s law went into effect on Jan. 1, nearly 20 percent of all Americans now have this option. There’s no reason why those of us in New Jersey should be denied the same compassionate option.

The terminal disease I have is called Alpha 1 antitrypsin deficiency. It's a genetic disease that gradually reduces lung function over the course of a lifetime. My lung function is down to 29 percent. Every time I get any kind of lung infection, my immune system overreacts and further damages my lungs. Unfortunately, there's nothing to reverse the progress of this lung disease.

I was diagnosed with it more than 13 years ago when I was in my early 40s, so my family, my children particularly, have grown up with the knowledge that I face stages of my disease that will grow progressively worse. My family absolutely supports me having this option if it's something I decide I’ll need. I think the hardest of my family conversations was with my mother, who feels so sad that she's passed on this genetic illness. But she understands why this option would make sense and would provide peace for me. I've also found support from my Unitarian congregation.

Susan Boyce of Rumson rallies outside of Congressman Chris Smith’s office on Valentine’s Day with local organizations and voters to request the Congressman to make a date to host an open, public, town hall meeting to discuss a range of pressing issues in Freehold, NJ Tuesday February 14, 2017. (Photo: Tanya Breen)

I know I'm not there yet, I have lots of hope. I have a very good life now. While I'm still active, I have adapted well to my increasing limitations. I have a supportive, loving family that helps take care of me, and I'm very thankful for that.

But I know there's going to come a time at the end of this illness where I'm going to encounter more suffering than I can bear. Until then, it would be a great comfort for me to know that when that suffering becomes unbearable, I’ll have the option to ask for medical aid in dying, so I can die peacefully in my sleep, at home, with my family by my bedside.

I realize that my need for this bill isn't imminent. But I know so many others for whom it is.

I have difficulty with mobility, so I consider myself part of the disability community. But there's nothing in this bill that is going to take anything away from people with disabilities. It is only going to provide options for those of us who are terminally ill.

What I think people most misunderstand about medical aid in dying is that terminally ill adults who would be eligible under this bill to use this option are not eager to die. They want to live, but they are dying. What we want to do is avoid needless suffering at the last little bit of the dying process. Just having this option available brings peace in and of itself, even if it's never exercised, and about one third of Oregon patients who get a prescription for aid-in-dying medication do not take it.

Knowing the comfort that having this option would bring to others like me in New Jersey, I’ve chosen to use the precious time I have left to live to advocate for this bill’s passage. Join me in urging your legislative leaders to bring the Aid in Dying for the Terminally Ill Act to the floor of the Assembly and Senate for a vote.